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NCF News and Research Updates

by Alan Cocchetto, NCF Medical Directorę 2007

There has been an extraordinary amount of effort made by the National CFIDS Foundation (NCF) to greatly advance our research in an effort to provide for improved scientific understanding of this disease. During the last nine months, the NCF has discussed CFIDS/ME with some exceptional researchers who have expertise in several areas of medical science of interest to us. Those contacted represent the best and the brightest in their respective fields and this is why the NCF continues to make true strides in our understanding of this disease. Certainly none of this would be possible without the guided assistance from the researchers themselves who have been most generous with their time and talents and who continue to provide the NCF with the best possible guidance and hope for our scientific efforts.
We are happy to report that the NCF's visibility as an organization continues to grow. There are several indicators of this. The first is the activity level on our website which is currently averaging 5000 plus hits per month. Another indicator is that our membership applications continue to climb. In addition, the NCF has been very fortunate to have received over $ 900,000 in research grant applications for this funding cycle. Likewise, the NCF had the best year ever with fundraising for our research grant program thanks to the kind response and support from the patient community. These are true indicators of growth, effort and scientific inquiry that would not be happening if the NCF wasn't being taken seriously. The NCF is having a genuine impact in the CFIDS/ME community.
Those who walk this journey with us frequently comment that "Only science can provide definitive answers to a disease that has been overwrought with politics and division." Our research community is keenly aware that the "Faces of CFS" traveling road show is no substitute for the legitimate medical science that we are currently involved in. As patients ourselves, each of us realizes that we are fighting for our health and for our lives each and every day. Therefore, to improve the quality of life for all patients, we must continue to "assault the science" and not deviate from our course of action. Eventually, the true science of this disease will overtake the politics of this disease.
With that said, let me provide you with several updates regarding our research along with additional news items that are noteworthy as well.
Dr. Yoshitsugi Hokama, Professor of Pathology with the John A. Burns School of Medicine at the University of Hawaii, has published a new paper with his colleagues titled "Biological Activity of the Functional Epitope of Ciguatoxin Fragment AB on the Neuroblastoma Sodium Channel in Tissue Culture" in the Journal of Clinical Laboratory Analysis. This research was sponsored by the National CFIDS Foundation along with the University of Hawaii Foundation. In this paper, using various assays, Dr. Hokama found that it is the west sphere of the ciguatoxin molecule that is responsible for sodium channel activation while the monoclonal antibody for ciguatoxin (MAb-CTX) binds to the east sphere of this molecule. You may recall the the blood of CFS/ME patients reacted with the MAb-CTX in assays completed at the University of Hawaii. This paper provides direct proof of the specific molecular components involved in patient sera reactivity.
In other news, two members from Dr. Hokama's research team will be making formal presentations of the National CFIDS Foundation's research at the Experimental Biology 2007 Conference. This will be held at the Washington Convention Center in Washington, D.C. from April 28 thru May 2, 2007. The first presentation, to be made by Cara Empey-Campora, is titled "Development and validation of an enzyme-linked immunosorbent assay (ELISA) for the detection of ciguatoxin using chicken immunoglobulin Y as an analytic tool." The second presentation, to be made by Cynthia Hara, is titled "Acute Phase Lipids associated with phospholipids of Cardiolipins in sera of patients with Chronic Fatigue Syndrome (CFS) and other diseases." The NCF
congratulates the University of Hawaii team for their dedication and continued scientific progress on behalf of patients worldwide.
The National CFIDS Foundation is also pleased to announce a new research grant for Dr. Yoshitsugi Hokama from the School of Medicine at the University of Hawaii. Dr. Hokama is the recipient of a NCF research grant for $65,000. His grant is titled the "Bioassay of Liver Cells in an In-Vitro Assessment of Mitochondrial Damages Following Exposure to Toxic Agents." Here, Hokama's Pathology team will examine changes to the mitochondria in liver cells following exposure to the ciguatera-epitope. This should prove to be a useful model for the assessment of cellular damage to the liver of patients with CFS/ME. As such, the NCF is very enthusiastic about this new research since it may potentially pave the way to important drug therapies aimed at improving the liver function in these patients.
As mentioned in a previous National Forum, the NCF was placing much of its efforts on understanding the links of this disease with the bone marrow. In this regard, we have made additional progress. This progress will become the focal point of a future article on this topic. However for the time being, since the liver shares some key signaling pathways with the bone marrow, Dr. Hokama's liver research studies should greatly assist us in furthering our understanding of the medical science in this area.
In other news, researchers at Northwestern University are currently evaluating several compounds for the National CFIDS Foundation. These compounds will be used to assess Parainfluenza Virus-5 (PIV-5) viral activity using in-vitro assays. As such, these assays act as an antiviral assessment tool and should aid us in our understanding of the signaling mechanisms employed by the virus. This is critically important because of the preliminary findings by Dr. Donald Carrigan and Dr. Konstance Knox, both scientists associated with the Institute for Viral Pathogenesis, regarding the involvement of PIV-5 in patients with CFS/ME. We are grateful for the generous response and assistance from the research staff associated with the Horvath Lab at Northwestern University. Research in the Horvath Lab focuses on signal transduction and gene expression in mammalian cells; specifically the biology of a family of proteins known as STAT proteins. STAT proteins are biomedically important factors that have been implicated in many human diseases including cancer, inflammation, and immune deficiency. You may recall, Dr. Konstance Knox presented research on the role of Stat-1 in CFIDS/ME patients at the AACFS conference in 2004. This research was funded by the NCF.

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